Supporting Siblings of Terminally Ill Children

by Rainbow Trust Children's Charity
Phoebe and I
Phoebe and I

When Phoebe was 14 months old, I noticed a rash on the back of her legs. Over the next few weeks Phoebe was admitted to hospital for various infections before a consultant sat us down and told us that Phoebe had leukaemia. Our whole world came crashing down.

The following day she was sent to the oncology ward where she spent the next two months as she was so poorly. My husband couldn’t go back to work as we had our three year old son, Ollie, to take care of. We tried to keep things normal for him so we took him to school but I couldn’t spend the time with him as I just wanted to be with Phoebe in the hospital. Nathan, my husband, would stay with him at home and I’d stay in the hospital with Phoebe. When I needed sleep, I’d come home and Nathan would stay in the hospital with Phoebe.

Our nurse put us onto Rainbow Trust Children's Charity – she could see we were struggling with being in the hospital and looking after Ollie. Nathan had to go back to work so it was hard.

We were introduced to Rainbow Trust Family Support Worker, Amelia - I was so happy for the help. Ollie goes to nursery two days a week so on the days he’s home, it’s a struggle. I felt like I was pushing him out which I hated but I needed to be with Phoebe. Everything was about Phoebe. Ollie would cry a lot and when he didn’t get his way, he’d kick off. I didn’t know what to do for the best so when we were referred to Rainbow Trust, I was so relieved.

Ollie was only three and he didn’t understand the situation so Amelia particularly dedicated quality time to playing with him. They got on the minute they met. He still gets so excited when I tell him she’s coming. It’s such a weight off my shoulders knowing there is someone looking after my little boy so that I can be with my sick child. Ollie loves Amelia and I think nothing of leaving her a key to collect him from school and take him home to play and then she brings him up to the hospital so he doesn’t have to be there too long.

He’s much happier now, he’s more confident and he’s more settled. Having someone there just for him has made a big difference. He can talk to Amelia and he can play with her when I am not around. She is there for him. Having someone there who you can trust with your child is amazing, I don’t know what we’d do without Amelia now. She’s just brilliant. If I know Phoebe has an appointment next week, I know I can call Amelia and ask her to fetch Ollie from school and that is such a relief for me.

Rainbow Trust take care of you and your family, not just Phoebe but Ollie and me as well. Amelia is just brilliant but I think more people need to know about Rainbow Trust. I didn’t know about them before Phoebe got sick. Amelia is just wonderful; we couldn’t do without her now. 

Lily-Rose plays with Shirley (Southern Daily Echo)
Lily-Rose plays with Shirley (Southern Daily Echo)

As my son was dying, I needed help to support his three-year-old sister...

Baktash was eight years old when he was diagnosed with a brain tumour. Baktash had radiotherapy, as his mum, Zakia, recalls, “They told me that as long as the tumour didn’t grow he would lead a normal life”.

Six years passed and with Baktash doing well, Zakia had a daughter, Lily-Rose. However, one day Baktash had an operation on a second tumour and was rushed back to hospital soon afterwards. Zakia remembers the day vividly. “He had a CT scan and at 1am the doctor came and simply said, ‘His tumour is really bad, he’s going to die’. I was on my own with Baktash all night and I just cried.”

Zakia remembers the impact on her family. “At the time I just wanted to spend as much precious time as I could with Baktash, I wasn’t able to focus on Lily. She was struggling as I wasn’t able to do anything with her.”

Zakia was referred to Rainbow Trust Family Support Worker, Shirley. “Lily was much happier after Shirley started. Before that her life consisted of hospitals or being stuck at home. Shirley took her to places like Rainbow Trust’s Treasure Chest play room; she’s so happy when she knows she’s going there.”

Shirley was also able to help Lily cope with Baktash’s illness. This relationship proved especially important, when Baktash died. Zakia says, “I couldn’t leave Baktash alone, but Lily was upset, so I called Shirley”. When Shirley arrived the family asked her to speak with Lily and explain to her what had happened, since they had such a strong bond.

Shirley still takes Lily to places like the Treasure Chest. She is also there for Zakia when she needs to talk about Baktash, and she will be there for the whole family, for as long as they need her. 

Rowan and Petra
Rowan and Petra

Petra’s sister, Rowan, was diagnosed with a brain tumour five years ago.  She has undergone years of treatment and her big sister, Petra, has been by her side all the way.

Petra, like most eleven year olds, just wants a “normal” family. She wants to be able to go to the park with her sister or play hide and seek but can’t as Rowan is visually impaired, a side effect of the tumour. “It makes me sad because we can’t do things like walk to the park,” says Petra.

In October of last year, Rowan got septicaemia and was in hospital for a few weeks. Beth, the girls’ mum, had to be in the hospital with Rowan. It was Petra’s birthday and she and her brother were looked after by a number of friends and family members. “It was annoying not having the perfect birthday, having all my family together,” says Petra.

Janet, one of our Family Support Workers, takes Beth and Rowan to hospital appointments which means that Petra’s dad can take her and her brother to school. With Janet’s help, Petra doesn’t have to go to the hospital with her sister any more. She can continue with her own life and all she likes to do.

Janet’s help allows the rest of the family to continue with their usual routines as much as possible and the Family Support Workers’ support is aimed at normalizing life for these families who find themselves in a “new normal.” Rainbow Trust is acutely aware of the impact that a sick child has on his or her siblings and Family Support Workers do as much as they can to support siblings.

Beth and Will organised for Petra to have some counselling to help her through her difficulties with Rowan’s illness but she didn’t feel that the counsellor understood her so did not continue. Our Family Support Workers do understand and can help, they have seen so many siblings struggling and have found ways to help siblings cope and sibling support has become a big part of our service.

While this extra-ordinary young girl watches the world go by wishing her family life was as ordinary as her friends, she would like to tell other siblings in her situation, “Don’t hide away, don’t bottle it up, if you find it awkward talking, write a diary or talk to cuddly toys, tell somebody so you don’t feel constantly upset.”

Peter was two years old when he was diagnosed with leukaemia.  He was admitted to hospital in Oxford for treatment.  Flora, his mum, stayed with him and her husband took his twin brother, Thomas, home to Reading.  

The family was quickly referred to Rainbow Trust and introduced to Family Support Worker, Jess.  She takes Flora and the boys to hospital appointments, plays with Thomas while Peter is in treatment, and when they are both home, she plays with them together. 

Peter is very clingy to his mum, which means that Flora struggles to do anything without them, so having Jess as a playmate helps her immensely.  She can take a shower or do some chores, which gives her some semblance of a normal life.

It is heart-warming to know that there are people who dedicate their time to others.  Our Family Support Worker, Jess, has been an angel.”      

Flora, Peter and Thomas’ mum

At 10 weeks old, Dominic was rushed into hospital with swelling and fluid on his brain and underwent emergency surgery to remove the fluid. An MRI scan, four days later, showed a cancerous mass on his brain, spinal column and central nervous system. Doctors told the family that what they were seeing was extremely rare and unlikely to be treatable. Dominic’s parents were told he probably only had three weeks to live.

During the following week, further biopsies and tests revealed the “tiniest glimmer of hope,” remembers Natalie, Dominic’s mum. There was a chance that the cancerous cells could respond to chemotherapy drugs but the consultant was hesitant as Dominic was so small and the drugs would leave him open to any kind of infection. He had to stay in hospital for the next five months and would not leave the ward in that time. Natalie stayed with her baby boy for those five months and worried constantly about him and Zach, her other son, who she could not see. She was isolated and governed by the hospital ward and Dominic’s treatment.  

CLIC Sargent referred Natalie to Rainbow Trust and Vicky, one of our Durham based Family Support Workers. Vicky visited Dominic in the hospital once a week which gave Natalie a few child-free hours where she would “grab a shower or get off the ward and relish the outside air.”

 “Parents who haven’t found themselves in similar situations cannot appreciate the dilemma of having a very sick child confined to a hospital ward. Despite the parent’s need to get away from it all, there is a terrifying fear of leaving their sick child unless they can balance it with the knowledge that their child is safe and cared for. I trusted Vicky from the moment we met, in part due to the fact that Rainbow Trust workers are well known to the other families on the ward going through similar circumstances and everyone sang Vicky’s praises. Primarily though, I felt comfortable leaving my baby with Vicky because Dominic himself appeared to love the time he spent with her.”

During those five months Dominic underwent intense IV chemotherapy and against all the odds, his next two scans revealed that the tumour had reduced in size. He was sent home and allowed to return to the oncology clinic on a regular basis for the next 12 months for oral chemotherapy administered by his parents one week out of every four. Dominic had to have an NG tube fitted down his nose to administer the drugs. 

When Dominic was diagnosed, Zach was five years old and he struggled not having his mum around for those five months. As much as Natalie tried to be there for Zach, she could only do so much. She told him he could talk to her about anything that was bothering him to which five year old Zach replied, “I can’t mummy, you’re never here because you live in the hospital.” Natalie was heart-broken seeing what an impact Dominic’s illness was having on his brother but she was unable to do anything about it at the time. This is where Rainbow Trust’s sibling support came in. Vicky took Zach on days out and to drop in groups where he met other children and families in similar situations. Zach knows his family life is not normal so Vicky has tried to let him do things that can help him feel more normal. At the drop in groups he can talk to other children who also have a sick sibling and he gets to do arts and crafts which is something he loves. The hospitals give their patients the Beads of Courage when they have been through various treatments so doing the arts and crafts at the drop in groups means he can take his own achievements home.

“Rainbow Trust Family Support Workers all know the siblings, they put the hours in,” says Natalie so she felt very comfortable leaving Zach with Vicky and the others as she knew they were aware of his situation and would look after him.

Shelly began supporting the family when Vicky went on maternity leave and Dominic adores her, so much so that “Shelly” was one of his first words. Once a week she visits the family and takes Dominic to soft play where he can play and be like other children his age.

Without Rainbow Trust, Natalie believes that the desperate situation they were in would have been worse. “With their help, they made our unbearable situation more bearable. Until you have walked in the shoes of a parent with a sick child, you cannot understand, but Rainbow Trust does,” says Natalie. “Rainbow Trust comes along and looks after your child for a few hours and you know you can trust them.”

Vicky’s weekly visits meant that Natalie knew she would have that break where Vicky would stay with Dominic and watch over him while Natalie went for a walk, got out of the hospital and walked into town, “just to be with other people in a normal environment. I’d immerse myself in the crowds, make phone calls or take a shower and wash my hair, without any interruption.” Natalie knew Dominic was safe, she knew that Vicky was happy changing his nappies with all his tubes etc and she knew that Vicky was an advocate for her child when she wasn’t there.

 “With Rainbow Trust I didn’t feel that my coping abilities were being judged. Other family members or families were always trying to give us useful advice but unless you’ve been in the same situation it’s difficult to do this,” says Natalie. “Rainbow Trust comes along and puts an arm around you and walks with you, understanding what you are going through.” The Family Support Workers come as often as they can within the confines of their diary. Shelly taking Dominic out has been good for his development as he missed out so much being in hospital and in treatment for so long. She still takes Zach out, picks him up from school and also takes him to sibling groups.

 Now that Dominic is well, Natalie knows that her family does not need Shelly’s help as desperately as others might. “Shelly does what she can. If something arose or we had an emergency, I know I could ring Shelly and I know she’d help,” says Natalie, “Rainbow Trust is fabulous.”


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Organization Information

Rainbow Trust Children's Charity

Location: Leatherhead, Surrey - United Kingdom
Website: http:/​/​
Project Leader:
Jenny-Anne Dexter
Leatherhead, Surrey United Kingdom
$22,520 raised of $30,000 goal
388 donations
$7,480 to go
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